Hey who took My Life Away?
I have been living the roll of a carer now for two and a bit years; I have a spouse and three fantastic kids [that is on a good day] but blow me, on a bad day things can be horrific. Living with someone with bi-polar, manic depression, ADHD can really take it out of you; throw in three kids aged between 4 and 15 all with at least ADHD, it’s ‘kick back’ and let the good times roll. Hey don’t get me wrong I don’t begrudge playing the carer roll, but boy it would be nice to know what the hell I am doing. Most days it’s like hey I can help, I am helping, then other days it more of ‘gee this [that] has made it even worse’.
Imagine waking one day to be told your entire f*cking life has been taken from you! No you don’t get to die, you get to live everyday as if you are in a vacuum, your thoughts don’t gel, its like your living on a deserted island except you have to contend with sh*t-loads of other people. Please don’t think for one minute I know what it is like to have, say ‘bi-polar’, god I hate that word [same as ‘mental illness’ it just brings up all these awful connotations]. If someone in government was diagnosed I bet there would be a nice new name for the disorder quick smart. I am only going by what has been said to me or I have read or seen of what these people actually go through each day. To me ‘mental illness’ is a shocking word, if you meet someone on the street and they tell you they have a mental illness, do you embrace them as a friend or do you run like blazes. [Hey run slower you won’t pant so much]. I used to be like that, I came to learn of such a disorder by first falling in love and then the diagnosis came along, how do you deal with this. I didn’t even know what I was dealing with! How many spouses have run when their partner is diagnosed later in life after they meet, after the kiddies arrive, when the mortgage is nearly paid off, but this is a ‘piss poor approach’; as they say ‘in for a penny in for a pound’, or with a sufferer of bi-polar [from now on I will use ‘bop’ instead of bi-polar][[such a sh*tful word ]] I’m beginning to think the saying should be ‘ in for a penny in for the roller coaster ride of you life’.
Believe it or not I actually enjoy the learning, in the beginning I would come home from work [and I’ll tell you after 10/12 hours with no more than 25 minutes off during the day you come home pretty buggered, not at all receptive to bullsh*t] and you see last night dishes still on the dining table sh*t all over the place, a coupla kids that never got to school and the missus in bed still, lets just say it is not a pretty sight .I really hate to tell you this guys, but the only remedy is dig in and lend a hand. To me HELP is the only way. However you look at a sufferer of bp, help is everything. Whether it be dealing with the disorder, coping with the: ‘why me’s; I don’t deserve this; who is to blame; the shopping; paying bills; helping with the kids; the house and on the list goes, help is what’s required, not pity, no shame, just a bit of bloody understanding. It’s somewhat of a shame that a human life is worth rather less than a gram of cannabis these days. It astounds me that going buy published figures a person with a mental illness is way less likely to commit an aggravated crime. Most murders are committed each year by people who are supposedly ok! At some point the mongrels in government and the media MUST be accountable for their actions, especially the media! Gotta good story; well that’s all that matters! We’ll get good ratings. Surely there is a nice story out there about someone with mental illness. Peoples thinking, the way they deal with someone who appears different must change and what is the best way to change a persons thinking’ through the media .we all need some help.
HELP, you walk into one of those Govt. offices that hands out all the money and you see signs everywhere saying ‘we care for carers’ what utter codswallop a bigger load of bullsh*t I have never heard. Hey you gotta care for someone, good, then do it on two hundred a week .pay your petrol, pay this, pay that, come on you can live on pittance. I personally haven’t been out anywhere in two years, just simply cannot afford it. As a carer would appreciate most of the money is purely for the family. When I first signed on in ‘that’ office I was told produce your birth certificate and you’ll be paid immediately, beauty, need it now I had to give up the full-time job last month. I received my first pay some 18 days later [they managed to put someone else’s birth certificate in MY file and then told me I didn’t hand it in. I’m not saying to lie but as a carer when you fill out the forms lay it on as thick as possible. Why cant the government hire someone with ‘bp’ or other illnesses to work in these areas so they may have some sort of insight into the problems that people actually have. it seems to me there is so much dishonesty and ineptitude in the system even those being honest are looked at as criminals. Looking back I wish I had of told a few white lies I would be so much better off now, not that I am condoning lying to the Govt. but if you rely on them you are in for a battle. If it weren’t Govt. run the liquidators would have been involved a long time ago. Somehow we need to get someone in Govt. that cares for something other than their super pay out or trying to look good on the world stage, how about helping our people first, when was the last time someone came to our aid?
It’s a bit like the drug problem in Australia people are found dead in the streets every day, what do we do, we call ‘em’ junkies and create safe injecting rooms what about looking at the reason why our society is so messed up, fix it from the beginning not the end. Look at mental illness, how many people are diagnosed in there 30’s or forty’s, later on in life, unless you have an illness that shows like autism or cerebral palsy the odds are you will be pretty old before someone notices .it seems general practitioners need better training in these areas not just to dole out meds and send you on your way. We need to know we can go to a doctor and get value for money not just more pills thrown at us. It doesn’t matter who you are meds are not cheap and how many sufferers out there are on the wrong meds through ineptitude or a doc simply not caring enough to find out what is actually wrong and the way to fix the problems .I am not in anyway qualified on the medical side of things but I know my spouse is on the wrong meds for her. But you try and change them. What to do, go and see a shrink that doesn’t bulk bill and you are up for a lot of money, go to one that doesn’t bulk bill and the wait can be eternal. Not long ago I was talking with a triage nurse [who was an excellent help] and he suggested keeping away from doc’s that bulk bill because you get exactly what you pay for, the shrinks that don’t bulk bill are way better, what a wonderful system, you live somewhere under the poverty line and because your finances are limited you must put up with inferior care. we are now excited about seeing a new shrink nest week but this has taken three months of knowing the meds are wrong and putting up with side effects that may not have been necessary. Do we have to wait until little jonnie w bush is diagnosed before there is a change?
I would strongly suggest that if you have just been diagnosed join a support group talk to as many suffers as you can, find out about the different meds their side effects, what they do, do they help, all these sorts of things so when you see the shrink you have some knowledge of what’s going on, so when the meds are handed out you will have some idea what your in for and if they are not helping you’ll be in a better position to get the meds changed. The meds are for you not the person next door they must be specific to an individuals own needs. Like would Michael Hutchens be alive today if it wasn’t for Prozac? It seems funny to me that drugs that have been available for years have now been taken off the market because they seem to lead to suicide .I’d love to know what Paul Hester was put on for his depression, not just that he hung himself, but that is how terribly important getting the right meds is. Its not like we are talking you will get a tummy ache, if the meds are f*cked up there is a very real chance you will end up dead. And if you are not in the public eye basically no one will ever even notice. Parents, doctors, teachers etc need to be better trained/informed of the warning signs so help can be found much younger in life. How many young boys and girls have to throw themselves in front of a train before we really try and help?
As a carer life can occasionally a little bit stressful, you are looking after others and I find it rather difficult to look after myself, you can’t do this. How, often do we put something off to care for another? Finding the time is the hardest thing, by the time the kids are dressed, in school, a little housework, look after the missus, get her up, dressed etc, make sure the meds are given on time [personally I make sure no meds can be found around the house] feeding yourself picking up kids and the day is gone [I will never make a derogatory comment about a housewife again this is a bloody hard job you need to be switched on 24 hours a day [at least] trying to give the meds consistently is also very important , the more stable the meds seems to create a more stable person , moods can swing quicker than the Melbourne weather so you have to be reliable. then there are the days when the meds are refused, getting around this can be quite difficult I find a gentle approach is needed .it can be very frustrating trying to explain the importance of the meds regularly being taken especially when someone cannot see any benefit to them .it must be horrible knowing you have to take a sh*t-load of pills for the rest of your life when you cannot see any benefit to them. when a person is up the meds are ok but when on a downer they seem totally useless .maybe this is a sign that the meds are crap and not of any benefit, time for a change of meds? if a mood stabiliser is not stabilising the moods then of what benefit is it? this is time to talk to the doctor get the meds changed ,how many people out there have different meds for the good times and the bad? its like when someone is down your left to bring yourself up . I often wonder if the meds actually help, I’ve seen people with’ bp’ that take no meds, they still have ups and downs; is there really a difference, martin plaza asked us years ago ‘what are all these chemicals doing to my brain’ sometimes you have to wonder!
Talking seems to be one of the biggest problems to overcome. If the person you are caring for is yet to come to terms with the illness [accepting it] they have then you’re in for a bumpy ride. Instilling trust to a degree where communication is possible is a must .I found asking things like ‘what’s wrong ’will send you in a backwoods direction, mollycoddling can also be disastrous. find it imperative to talk in a calm even voice, not to be patronising and be honest. Yes you have bi-polar but you’re not on your own. The feelings and emotions your going through are not unusual, not uncommon and as I have mentioned to the missus once or twice when she says she just wants to be ‘normal’, ‘show me someone in this mixed up world who is normal’; look around you, you may see someone different to yourself but normal? Is it normal to blow some-ones head off to go to war, to steal to rip off your people to the extent they are dying in the streets through lack of food and hygiene. What is normal and who around you is in a position to say that your not. To me normal is being happy with what you have got and being happy with yourself. Keeping in mind you are dead for a long time, somehow we have to learn to cope. We don’t know nothing when we go to school, we don’t know nothing when we go to work, have children, but WE LEARN, we cope, we survive. It may be one of the most monumental challenges in life, but a sufferer of a mental illness must learn to adapt to what they have. Join a support group now! No doctor can even dream about helping you like a support group can. No drug will ever help like a support group.
If your caring for someone, getting them into a support group will open their eyes so wide and I found this helps people open up to loved ones, not to mention the benefits in lifting a persons self esteem. And to know that you’re not alone with your problems seems to be an immense help.